New Radiation Oncologist

Becky · 04-18-2009, 10:36 AM

After almost 5 years, most of you know about my ups and downs I've had with my medical team and that I have switched every doctor I had. I will admit my second choices from medical onc, primary care and gyne have been great. I tease my husband (who is my first - going on 25 years this year) that I have much, much better luck with doctors the second time around.

Anyway, as many of you know, I also had problems with my radiation oncologist. I have to still see him every 6 months primarily because I also had a tiny, low grade dcis in the opposite breast at the same time I was diagnosed with my node positive IDC. This dcis was not radiated although the cancerous side was. At that time, I was working so hard to be able to get Herceptin (which was not offered then as the trial was still going on) that I really didn't do much research on radiation - and specifically research on radiation of dcis as I was getting radiation on the cancer side.

Later, during these 6 month follow ups (and having done research and having various studies on dcis come out that said all dcis should be radiated - some studies going out to 2003 - well before I got my rads in 2005) I would ask him why I didn't get rads on the dcis side. He would tritely reply "it was small", "it had a 2 cm margin all around", "it was low grade". The last meeting in early Sept 08 he said " the surgeon said not to". Well, I really lost it then. And I mean, I lost it and started yelling. Sighting the studies etc. He said he used the Van Nuys system. I knew this system and I told him, if you used that outdated system, then why aren't you following it to the T (I should be getting a diagnosic test on the breast every 6 months (ie: mammo, then MRI or BSGI, then mammo etc, etc) and I should be seen by him every 6 months for the rest of my life (he just told me I graduated to once a year and after I hit 5 years post rads, I don't need to see him anymore). He was freaked and I am sure, very embarrassed. I told him, if you are going to use a method (ie: Van Nuys) then you follow the whole protocol. I was always disturbed after every appt with him (as I had been with others) but I never changed from him (although I have been immensely pleased with all my other changes). So... I changed and what a wonderful, wonderful experience it was.

The new guy said he wants me to have some kind of diagnostic test every 6 months. I told him via my medical onc, I had a BSGI in January after a digital mammo in July. He said he was thinking more along with MRI then mammo but he said he didn't know anything about BSGI but would find out (and he DID and called me and said I could choose if I wanted that or MRI). He wants to also see me every 6 months. Then I asked the dreaded question - should I have gotten rads on the dcis side. He told me he would not have given me rads. His rationale is that it was so "benign" of a dcis. He said if nothing else had ever happened, I would probably live my whole life with nothing ever happening with that dcis (if it had been left in). However, I have had cancer and I have to be watched. He said another reason not to give rads is that it was so low grade so why "waste" the rads. He said, what if you get something that is close to the chest wall and we have to give you rads and really can't do as good a job because you have already had radiation. He said, I don't think anything bad will happen to you, but if it does, we have radiation and didn't waste that opportunity on something with little relevance - WOW, a real answer I can get my hands around.

Just wanted to share as the right doctor is everything in the world as we all know.

Have a great weekend!

Believe51 · 04-18-2009, 11:24 AM

Becky, I am so pleased that you are finally satisfied with the team you have tailored-made to fit. This is very important for our body/mind quality of life. This is a very powerful post to all and this should be kept deep in the vaults of our minds. We hire these doctors to tend our recovery and rely on them for the professional knowledge and advice they offer. The patient is the one who does the rest of the work. If we hired a gardener to take care of our gardens and they were not doing the job we are paying them for, surely we would look for another gardener! Bottom line is we are their boss and are helping to pay for their mortgage; we hired them and we can fire them as easily. I do not have a problem paying a doctor if he is doing what he was hired to do. It is important for me to know that I searched for the best team around. With saying that I must mention it would be one less regret if and when something happens (to Ed).

Again, I am so happy to hear that Becky is finally content with her team. You have been toying with things for some time now. Currently you reap the rewards of that contentment and you deserve it. I have to say that I love the response you gave to the other doctor. I love that you are educated and well researched and this has helped you in that quest.

We also must remember that this is all about us, right?>>Believe51

PS: In the beginning I used to get worried I would hurt some doctors feelings if they differed from ours or our wishes. Quickly I realized that it is not my job, nor responsibility to worry about their feelings. (ex: seeking another opinion, etc)

AlaskaAngel · 04-18-2009, 06:23 PM

I work with PCPs, and as a cancer patient I know how minimal their knowledge actually is about cancer treatments. Even the best PCP I know, a truly caring one, is happy to just hand his patients over to the onc and rads doc for recommendations without really knowing much at all about the therapies they are using. If WE don't question the specialists, nobody does. Thanks for setting such a great example, Becky.

AlaskaAngel

Joan M · 04-19-2009, 06:06 AM

Becky,

I know that the DCIS issue and radiation -- or nonradiation -- of that side of your breast has been a thorn in your side, and I'm glad that you switched oncs and at least will now get a regular follow-up every six months. I don't blame you for being concerned about it. Hopefully, radiation or not, you'll never have to deal with it.

Joan

Lien · 04-19-2009, 07:31 AM

Good for you, Becky! I guess I'm just plain lucky. I live in the Netherlands, and here every cancer case is reviewed by a team. I had a great surgeon (scar hardly visible, excellent shape after lumpectomy) and a teriffic rads onc (very helpful, always ready to explain things in detail, if he doesn't know something, he finds out and gets back to me) and a very knowledgeable onc who is not good at communicating, but who is up to date with all the latest research and who is a good listener. My GP keeps an eye on all of them, and has let them know from the start that he is keeping tabs. So they know that if they slip up, they will be "caught".

Jacqueline

RhondaH · 04-19-2009, 09:04 AM

I have to "interview" new rad oncs as mine (loved her) just left (didn't like the new facility and beaurocracy)...maybe I can see yours

Take care and God bless.

caya · 04-19-2009, 10:21 AM

Becky I'm glad you switched to a new rad onc. too, sounds like you are satisfied and happy with him. AlaskaAngel is so right, if WE don't question the specialists, then who does?

I have been blessed to have a great med. onc. (I didn't need rads), who is happy to answer any questions I have, and will discuss any new study, trial, treatment relevant to my case that I bring to him. Sometimes I think he is surprised at the depth of my knowledge, and I know I can credit this site with much of my info.

all the best
caya